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03/18/2012 11:26 AM

Sunday sunny Sunday- Klippel Feil Syndrome

Rosie88Posts: 708
I'm an Advocate

Ok, lets just call this a diary entry. A ramble.

It is BEAUTIFUL outside today in Chicagoland. 80 degrees.. if you close your eyes and stick your nose near some salt and (carefully) inhale.. you are on the beach in Florida.

I want to wash my car. That is all. It is SO dirty and the weather says yes yes YES you can! body says no. Now, I used to wash my car ALL the time. I take pride in it.

But no... dizzy, weak (legs too today?), out of sorts, numb hands and arms and shocking feelings, can't focus. Getting the hose out of the garage and to the spicket, getting the supplies out, the towels, bending over to do that task... NOT happening. Haa I would be found drooling midway in, leaning against a tire, with the hose still going. Talk about wetting your pants!


So, here I am. It has come to my attention that we NEED an Advocacy Group. A lovely lady named Carolyn wrote asking if we have one. Well, I don't think we do, do we? We need one. Speak up if you agree please cause I am about to get that rolling. Gilbert posted both on facebook and here about a grant for a study. We NEED this. But apparently we need an advocacy group first and so Carolyn is willing to help with that. Anyone else agree? There have only been 2 responses on both sites, from the same people. Um... helloooo. I know we are busy. We are IN the trenches.. but soon. We must. Like now.

If you are bored with this ramble.. you don't have to continue reading. I will never know.


But there is more!

So Grandma mentioned that Williams EMGs come back "normal" but he can't feel hot or cold. And today after reading about his further numbness and lack of those sensations, and having concern for him and wondering also for me...I became my own Dr and went and closed my eyes and stuck my hand in the ice cube tray. I have two fingers in each hand that can't feel an ice cube as cold. I know a Dr tested areas of my back and I could not feel cold. Sick

Up next for me... I am going to see a microsurgeon who deals with small nerves in hands, wrists, and face and head. He is doing procedures for head pain at UW Madison. This is unconventional but so are we. Its a consult... gaining knowledge. No stone unturned is what it seems we do. Blah. Laughing

Ok I am going to put up a new post after I finish my sandwich. Its a little campaign I have begun.

Just when you thought I would stop blabbering! Smile Sending the best to you all, and hope you are feeling ok and your kids are doing ok if you are a mom or grandma or friend who is helping another...




03/19/2012 04:35 AM
Posts: 73

Love you Rosie!

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